When Nada DeLong lost her twin sister at the end of 2019, she thought it would be a good idea to schedule a physical to check on her own health.
“I felt great. Like I had no signs, no symptoms, nothing,” said DeLong.
The routine exam found troubling results with her kidneys though, and started her down a long, difficult road.
“I went back to meet with (my doctor) and she said, your kidneys are at 15% and we’re going to put you on the transplant list,” DeLong said. “So June of 2020, that’s when I got notified.”
One-percent chance
DeLong was diagnosed with immunoglobulin A (IgA) nephropathy, a chronic kidney disease that can slowly lead to kidney failure over the course of 10 to 20 years. She would undergo immunosuppressive therapy, and eventually dialysis while she waited for a transplant.
In DeLong’s case, finding a match would take three years.
“One of the main factors is the fact that she had multiple antibodies against potential donors,” said Diego Beltran, M.D., a transplant nephrologist at Sanford Bismarck.
“This test that we perform before the transplant, it’s called PRA, panel of reactive antibodies. In other words, what is the percentage of donors whom Nada will potentially reject.”
DeLong’s panel showed her body would reject 99% of potential transplants.
Waiting game
DeLong searched far and wide for potential donors, but her father had aged out. Her mother and older siblings had underlying health conditions. Friends in her hometown of Belcourt and surrounding areas were not matches. And her best chance of a match, her twin sister, was no longer with her.
“So many people stepped up to try to be a match for me,” DeLong said.
Instead she waited, and sometimes came painfully close to getting her transplant.
“I got the call four times. Your emotions are like a rollercoaster,” said DeLong. “There was one where I did have a match and we did everything. … And as I was getting wheeled into surgery, the antibodies came back not a match, and I didn’t get the surgery.
“I was more hurt to tell everybody, because I felt like it was a disappointment. Not for me, but just to see the hurt in my parents, my dad, my boyfriend and my kids,” DeLong said through tears.
Finally a kidney donor
Then last August, DeLong’s wait was finally over. A deceased organ donor was a match.
“One of the most exciting moments that you might have as a transplant nephrologist is knowing that for a patient that has been waiting for so long, that moment has finally arrived. Just being able to call that patient and just communicate, ‘Hey, we finally got the right one,’” Dr. Beltran said.
“I never did give up hope because I’m a Catholic. I believe in my faith, I believe in God and I knew it was going to happen.”
Now, DeLong is doing great. Dr. Beltran says she bounced back even better than expected after the transplant. And DeLong says she has started a bucket list.
“I took up golf this year. I want to do a marathon in honor of all transplant recipients and donors. We’re going on vacation, just travel and honestly take everything day by day and be grateful that I have another life,” DeLong said.
And as far as her doctors go, she gets emotional just talking about them.
“I can never thank them enough. Sanford’s like my second family. They went above and beyond and I can’t say enough about them,” DeLong said.
If you or someone you know would like to register to be an organ donor, sign up at organdonor.gov or donatelife.net.
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Posted In Bismarck, Dialysis, Endocrinology, Organ Donation, Transplant
